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six months this week since my intracerebral haemorrhage


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Hi All

Well I am now coming up to my 6 month mark and this week feel really rough again!

I short, I had a bleed, which then led to hydrocephalus which was treated with an EVD and no shunt fitted, I suffer from Dizziness and sickness which shows no sign of let up!! They can find no cause for the intracerebral bleed....

I had a great Christmas and then have gone back to work three mornings per week which has been tough but I need it for my sanity!!!!!!

On Tuesday I was talking to another Mum in the playground and must have turned my head the wrong way and the whole playground started spinning it was like I had come off a roundabout - awful. Since then my head has been really bad - 5 days now - as if something has been all swooshed up inside my head? Does that make sense? Is this normal???

I also have a complaint going through at my hospital - I was in there for 48 hours before a CT scan and allowed to fall twice during this time (I had no balance and was barely conscious, vomiting and worst headache of my life) and the hospital are denying that I had any balance problems!!!! They have admitted the falls, but said a falls risk assessment was carried out that showed no risk of falls...... I was heavily bruised but nothing too serious, but my question was if you had scanned me sooner could this have avoided the hydrocephalus?

I do believe that my worst symptoms are the result of the hydro and evd placement and spend all my time thinking "what if" they had scanned me sooner it is driving me mad!!

The bleed was cerebellar I believe which I think is balance? Sorry for al the questions - I was looked after wonderfully when transferred from my local hospital to Salford Royal but you get no aftercare at all and are left with all these questions and worries...

Thanks All, yet again, for your advice :))

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You can't really change what has happened and can't turn back the clocks ... I had lots of if's and but's too. I had an undiagnosed bleed at 38 and had another one, which was a lot bigger at 42 ... with seizures and a stroke on my left hand side. I've never had my question answered, so it's been a case of seeing how things go.

8 years on from the second one, I still suffer from dizziness, which is often brought on by doing too much ... if you're only 6 months on, then yes, you still might experience dizziness, mine was worse at this stage as I wanted to get back to normal too quickly... you need to ask these questions to a professional, as nobody here is qualified to do that and each case of SAH is always different, as to where the bleed was and what might have been affected in the brain.

Personally, I think that you're perhaps doing too much and you might need to re-think what you are doing and calm it down a little ... the recovery time is at least 3 - 6 months (set by the Doc's for the physical sense ie. blood to dissipate etc and the healing process to take place, but it doesn't mean that you'll be totally healed in other senses) and that is the minimum time.

For a lot of us, it's at least a couple of years before a decent recovery sets in.

xx

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Hi Lawson,

Sorry to hear about the giddies as I call them.

Go and see Doc to put your mind at rest as Karen has said.

I get giddy if I move to quick or over exert (I will be at a standstill soon)!

Hope you feel better soon.

I have a shunt and get giddy sometimes !!

Best Wishes

WinB143 xx

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I am at 9 months and still suffer from dizziness. Not as bad as in the beginning. At 6 mos I went to see my Dr that told me it would take 12-18 mos to feel better. I went to see him because I was not feeling any better and felt like I was regressing.

My bleed was from an unknown source as well. Regardless, it's still a bleed.

Its so hard to feel like you are progressing when you feel bad. There are going to be times when you feel like you can conquer this mountain and other times when that mountain is weighing on you. It's a tough struggle but you will get there.

I

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Oh - how I sympathise with you. It's the not knowing what to expect and the OMG what's happening to me that is the worst thing. I have never worked out why they never explained that turning was an issue - the first time I tried it I quite simply found myself stretched out on the floor. I've been a lot more careful about it since.

I'm 2 years ahead of you in time since now. There was an explanation for the bleed - a ruptured aneurysm - and, like you, I had the hydrocephalus and am convinced that that and further brain swelling due to disturbed sodium levels did the real damage. It's taken me all the time since, and a lot of help from a good hydrotherapist, to get me standing up straight and at least trying to move forwards straight since. Not always successful - I'm pretty good at lurching - especially when worn out.

The "would it have been different if they'd scanned me earlier" question? Alas, we will never know. The duty doctor at the end of a phone advised my husband to leave me in bed (where I'd crawled with that sudden incredible headache - like some ghost had come up and hit me over the head with a frying pan) and treat it as a migraine. When I no longer recognised him the next day, he called the ambulance. At the first hospital, where I did have a CT scan, he was told by a nurse that it was lucky (!) that a scan was done at all - at the second, I went straight into surgery, which saved my life - but left me unknowing as to what to expect when they discharged me some three weeks later.

To this day, I don't really know. I can remember what I used to be able to do, without thinking about it - I used to sail, I was a trained race officer for sailing races - I used to leap on boats and just do all that. I used to ski. I used to ride horses. Today I have to think about getting 200 yards to the village shop. Life has changed and it's taken me two years of angst to accept it. I'm planning my retirement - still struggling to work because I have a, probably misconceived idea, that my charity needs me. I'm 61 anyway - time to hand on. But it's not easy. It never is until you have completely accepted that things have changed. I won't tell you that I've reached that stage yet - at times, I still rail in my mind - this shouldn't have happened.

Give yourself more time - I found it hard to accept that advice at your stage, still find it hard now - but it does get a bit easier with time.

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'What if' , two such small words that can cause such worry and regret. I'm not condoning any poor care or forgiving mistakes that might have been made but my experience is the more I look back the harder it is to enjoy the now and look forward. Try if you can not to dwell on what has happened too much when it cannot be changed unless there are positive lessons others or you can take from it.

Hydrocephalus post SAH is the effect of blood filling the ventricles , I learnt that the bigger the bleed the more likely that hydro will occur because the ventricles are overwhelmed and shut down to protect from this nasty red stuff. But they can repair and reboot and not everybody needs a shunt. My understanding from my team is that the actual bleed pretty much stems itself straight away because of the brain pressure that is naturally exerted but the problem is the amount of the blood released when it first happens and where it is and these factors are the best indicators of what the ventricles do in the long term.

Victoria is right that the effect of the hydrocephalus can add to the complications of recovering from a brain bleed. We basically had our brains squeezed in addition to bleeding and I found sudden movements an issue and dizziness. I am going to presume you have been checked out and that there is no issues so I think if you can it's trying to accept the limitations for now and see what tomorrow brings.

Make little adjustments maybe to compensate. I know for instance I need to take a stick if I am walking, but hey I can walk. I do fall over occasionally and try and tuck and roll but don't always manage it. I never stand up quickly especially from lying down. I never spin round or turn quickly any more and I miss dancing. I don't bend my head down for long ever and don't tip my head back at hairdressers. I go slow. The school playgrounds is intense , I wear sunglasses whatever the weather and ear plugs on bad days. So find things that help you and track the small improvements.

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